When your spouse is sick and you live in a “here and now” kind of world, you start to see life in a new way. Cliché as it may sound, our “living in the moment” mentality helped us cope with our fear. It allowed us to find things to love about each other that we may never have seen had we let those precious moments slip away into the hustle and bustle of normal life.
During the first few years after Dan’s diagnosis, things went smoothly – that is, he followed the treatment protocol and experienced “expected” setbacks, such as hospitalizations for infections, nasty side effects from medications, and blood work that was out of whack, resulting in the postponement of a dose or two of chemotherapy. Our life was a constant waiting game for the next big thing, the next hurdle, or bump in the road. Nonetheless, we were on track. For two years, the important tests, like bone marrow biopsies and spinal taps, continued to show beautiful, normal blood cells. We started to let our guards down. We began to plan our life, our family, and our careers. We finally began to see a future where cancer was merely a chapter in our story. But the leukemia returned after two years of remission, and everything changed.
Dan deferred another year of his PhD Economics program and geared up for another treatment protocol with another set of grim statistics. I worked full-time while balancing care-giving, appointments, and long nights at the hospital after full days at work. It took three months and a stint in the ICU with a serious sepsis infection, but the chemotherapy treatment effectively put Dan’s leukemia into remission. We relocated 3,000 miles from our home in Virginia to a renowned center in Seattle, Washington, so Dan could receive the transplant he desperately needed. Hope, along with mountains of support enveloped us as we embarked on the six-month treatment and recovery journey. Dan had conquered so much and we were inspired to forge ahead.
Shortly after arriving in Seattle, our hope was shattered again. We were astonished to learn that Dan’s leukemia had relapsed, just one week into his transplant testing and preparation, making him ineligible for the transplant. We got the news over the phone while watching the US gymnastic team compete in the Summer 2012 Olympics. The doctor wanted us to get to the clinic right away to “discuss our options.” We felt defeated and we needed hope.
After years of fighting leukemia, on that day, in that consult room, at that round table with two doctors, a nurse, and a social worker, we listened to the poor prognostic statistics for remission after two relapses. We heard them say that we were running out of options and that this disease was “very aggressive.” I took a tissue from the box the social worker gently nudged my way. Dan sipped from the water bottle that the nurse sympathetically nudged his. The doctor advised us to go home to “be close to family.” We held hands under the table and Dan squeezed mine three times, our secret signal for “I love you.” We knew better than to look at each other for fear of a complete and total meltdown and cascade of tears. It was on that day, after that conversation, that Dan and I first had to search deep into our hearts, into each other’s hearts, to find joy. We couldn’t allow this to be the end of our story, so we looked to love. And in love, we found joy.
So that was the day when Dan and I made a commitment to find something good, something positive, every single day. We knew that if we didn’t commit to finding a shred of happiness, a glimmer of light, that we would succumb to the sadness and fear surrounding us. That day changed our lives. For the next twenty-one months until Dan passed away, we kept our promise. Each day we asked each other, “What’s your little joy today?” Sometimes it was easy to find, but other times it was simply a kiss, a gummy bear, or five uninterrupted minutes at the hospital during a Jeopardy! game. As a result of this exercise, we lived more fully, loved more deeply, and cherished each other more sincerely.
Dan beat the odds and he received his unrelated donor’s bone marrow cells as a last ditch effort to put cancer to rest for good. He made his way through the rigorous recovery of post-transplant life for eighteen months of progress, then setbacks, ups, and then downs.
But leukemia returned again at a time when Dan was too sick to endure any more treatment. Leukemia ultimately took Dan from me, but, until his last breath, he encouraged me to find the joy. On the day before he died, as Dan peacefully rested and had grown too tired to speak, I whispered in his ear, “What’s your little joy today?”
Then he squeezed my hand three times.